Telling his story because right now he can't,
learning how to help, day by day

Wednesday, June 16, 2010

Mom? Can I ask you a question?

When this phrase tumbled out of Shea's mouth last week, I realized that I had never heard him say it before. Hard to imagine, I know.

Most kids ask questions and chatter non-stop...unless, of course, they have verbal communication difficulties then questions come for their eyes and hands and word approximations. Parents intuitively learn a whole new alternate language so we know how to communicate with our kids. But what about the big old impatient world?

This week, I was one of 24 field trip parents for Shea's Kindergarten visit to the Pt. Defiance Zoo. 40+ kids, 2 teachers and many, many very involved parents made the trip together on a big school bus. We were blessed with a wonderfully brief bus trip, but as we bounced along three to a seat, I heard all around me Shea's peers talking, telling jokes, sentences just rolling of their tongues, all of them taking speech very much for granted.

I wish that those usually easy to roll off the tongue sentences and phrases didn't get stuck, stilted, dropped. For Shea, sentences don't just naturally flow; each word is a labor and putting them together is a juggling act with a seemingly long drop that takes great patience for him and the listener.

Honestly, it is hard to hang in there with him to the end. I holler at Molly when she finishes his sentences because he needs to just bang through it, to practice. But I do it too. Usually in my head but sometime out loud when I can tell he is loosing the thought and getting frustrated.

The other day he said, "Remember when that was ice?" pointing to a tarp in the back yard with icky mosquito water in it. Yes, indeed, there was ice in there last winter and that he mentioned this sort of floored me.

I don't think he has ever said "Remember when..." before and I am thrilled that he is beginning to do it now. How wonder how he see his own struggles with speech?

Sometimes I say, "Shea, you are such a good talky-talky now. Do you remember when it was hard?" Wish he would answer me but he doesn't. I wonder if he will look back and think, "Talking was hard for me when I was a kid." Or will it be much more present, "Talking is hard for me and has been that way since I was a kid."

In the early days, I used to have bittersweet dreams about Shea where he was talking and saying words. Just being able to hear his sweet little voice felt like a gift.

Now, I dream about having a real conversation with Shea where he tells me what he is thinking or dreaming of or imagining or hoping to do. A conversation that is not Wii or Fudge pop related.

I hope that happens some day.

Life is not fair. They say it and I say it because it true. It isn't fair that for some kids talking is excruciatingly hard or that for some kids walking, focusing, socializing, breathing, listening is excruciatingly hard. A magic wand would be nice but all we have is our individual ways of coping.

So, no, life is not fair but I remind myself yet again, there is room in the world for Shea and all the other kids who have to work so hard to do the things that are so much easier for their peers. There is room for of them and they will be stronger, more patient, more adaptable people because of it.

Who is Shea's mom?

I am a 40 something mom who lives on a beautiful little island in the Pacific NW. It is a wonderful place to raise kids and we have two. This blog is dedicated to my son, Shea, who has a severe speech delay and extensive food allergies. And, to all the parents and people who work with children with special needs.